Category Archives: autism statistics

The Bully Project


Jackie Libby recalls that she and her husband, once found their son Alex passed out in the front yard of their Sioux City home.
“He said some boys were slamming his head into a seat on the bus,” Jackie said. “We thought he made it up.”

I keep seeing commercials for The Bully Project.  So I’m starting to pay attention.  I watched an interview with Alex Libby, one of the 5 kids who were followed for a year in this important documentary. The stories of these kids are heart-breaking, and include two  children who committed suicide after prolonged bullying.

Something about Alex made me watch more carefully — does he have some form of autism? They don’t mention it – but I spot a blue puzzle pin near his  shoulder, and when I look closely his mom is wearing one too.  I check  the promotional website but Alex’s bio doesn’t mention Autism. I wonder why.

Alex Libby and his mom Jackie during a TV interview about the movie release

Digging deeper, I find an explanation from the film-maker, Lee Hirsch: “…both Tyler Long and Alex have Asperger’s Syndrome, and we made a conscious decision not to disclose that in the film. We certainly could have, and perhaps it would have been insightful to the audience and we talked about it a lot. Ultimately, we decided that we didn’t want anything to make the audience think, Oh, well, that explains it. Well, of course. We didn’t want anything that anyone could hang onto in that way.”

Wow.   That explains it?  Well of course?   Like, they have Asperger’s syndrome, so of course they’re going to be bullied?

Lee Hirsch, film-maker, hugging Alex

A variety of kids are targeted by bullies, not just kids with autism.  Gay kids are beaten up. Kids with learning disabilities and mental health diagnoses are called names. Kids who are perceived as weak and non-assertive are intimidated.   Kids who are different are at risk of being bullied in so many different ways. But somehow, Alex’s blue puzzle pin reminds me of Katniss’ mockingjay pin in the Hunger Games books: a signal of solidarity from Alex and his mom to those of us affected by autism. A tiny symbol of rebellion from Alex in the middle of a media circus.

Rachel is slushied on Glee, a TV show that uses music and humor to discuss important social issues affecting teens

When people complain that the definition of Autism is “widening” and about “over diagnosis”, I hear them questioning whether kids similar to  Alex should be included in the Autism numbers. People may argue that the articulate and aware Alex doesn’t “really” have autism,  and that he was just another “different”  kid who got beat up on the bus.   In my life, I’ve met so many kids like Alex; kids with high functioning Autism who can manage at school without behavior problems, kids who can do the schoolwork, but just don’t fit in. Kids who have been shuttled for years to different doctors by anxious parents, without a diagnosis or treatment. Kids whose parents, like Alex’s, have more than a little bit of denial about the cruelty of other kids.  Many kids with Asperger’s get diagnosed as late as 6th or even 9th grades, and already have significant depression and anxiety.  These kids don’t need one -on -one assistance at school, and many of them would be mortified to have someone hovering near them all day. But they are at risk from aggressive kids, and need vigilant adults who are willing to intervene. [ Autism Puts Children At Risk for Bullying]

Worry about out-of-control kids underlies decisions parents make about schools for their mainstreamed kids with autism.  As teenagers move through middle school to high school, supervision and monitoring is looser, and possibilities of victimization increase.   Often, parents find alternative solutions, and send vulnerable kids to smaller religious- based schools and charter schools. Many parents don’t take any risks at all and pull out of the game, cyber-schooling at home. They don’t trust that adults within schools will do what is necessary to keep vulnerable kids safe.

The short bus is a target for offensive comments and jokes.

Maybe you think Alex should have been riding on the short bus, where he would have been safe from bullying peers. Maybe you think he should have been home schooled. But shouldn’t Alex be accepted for who he is, and have the independence he has earned? When kids with autism gain independence, parents  worry less about their own child’s behavior, and instead focus on their safety.

Kids like Alex may no longer be diagnosed with autism with the stricter criteria developed for the upcoming revision of the Diagnostic and Statistical Manual. The DSM is the document developed by psychiatrists outlining consistent criteria for diagnosis of mental disorders.   Since  insurance companies are starting to be forced to cover autism, I wonder about their role in tightening up the diagnostic criteria. The new CDC autism numbers, showing that 1 of 88 kids have autism, may still be  just the tip of the iceberg, as  a study by a Yale researcher found autism rates in South Korea are 1 in 38.     1 in 38 could cost a lot of money.

There will always be kids who don’t fit in.  Who don’t wear the right clothes. Who are preoccupied with Pokemon and Star Wars, and who’ve never heard of One Direction or Big Time Rush. Kids who are unaware of the subtle pecking order of kids, and who don’t know the rules of where to sit at lunch or on the bus. Kids who get teased.  Kids who don’t get the rules of the playground games, and who melt down when they lose.  Kids who nobody likes.   Where is the dividing line between the annoying kid, pestering everyone with repeated questions, and the kid with a clinical diagnosis? Which kid deserves insurance reimbursed therapy, and which should be left on his own, to sink or swim?

At this point you may be wondering whether the kids who are bullied are really the ones who need to be changed.  It’s a good question.  Should kids have to change who they are?  Well, no, we should not try to change gay kids, or keep them in the closet. Diversity makes people  interesting.    But we do need to look at the bullying ringleaders, whose unbridled aggression may develop into long-term anti-social behavior.  This is quite different from many kids with autism, who desperately want friends, but just don’t know what they are doing wrong.

Alex Libby, talking about the kids on the bus: “If you say these people  aren’t my friends, then what friends do I have?”

We want our kids with autism to actually have friends.  We want people to like them; we want them to be be included.  In social groups, I don’t use behaviorism to coerce kids to bounce their balls in the same rhythm. And I’m not  looking to transform kids with autism into Popular Kids. But I do want kids with autism to ride the school bus with the other kids without getting beaten up.   Maybe if I do a good job they will just….pass.    Maybe if I teach the right skills, when students are partnered with a child with autism, the other kids won’t roll their eyes or wince, making sidelong glances and exchanging smirks of sympathy. Or maybe typical kids will invite friends with autism to birthday parties because they want to, not because their mom said they must. I try to teach kids skills that will help them survive out there in the real world, such as what clothes and music are in, how to know when someone isn’t interested in what you’re saying, how to be flexible with rules, perspective-taking, and how to tolerate feedback without crying.  I set things up so they can experience the enjoyment of having fun with other kids, and so they will have the motivation to keep trying.   But teaching social skills costs money. Health care dollars.

Alex and Kelby with Victoria Justice

As parents, we want our kids to be accepted and have a couple of friends. We don’t want them to go trick or treating with us when they are 16, or to be alone on their birthdays.  We don’t want them to tolerate cruelty as the only attention they get, and we surely don’t want them to contemplate suicide.  We have to work through our own pain to face the difficult issues: we have to face the pain of seeing our beloved sons and daughters rejected by strangers, and the pain of our own experiences of being left out and getting picked on.  We have to find our voices and speak up, and then we can teach our children to stand up for themselves.

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Napoleon Dynamite: a happy ending movie about a picked-on kid who finds a couple of friends


Reaping Day


Effie reads a name during Reaping Day in the Hunger Games

This past week, everybody’s been talking about  the new CDC Autism statistics and  the movie release of The Hunger Games.

Mother waiting, as her child's name is picked from Effie's glass bowl

The rate of Autism is now 1 in 88 children.  1 in 54 boys,  1 in 252 girls. Families with new babies nervously wait for each developmental milestone, hoping that their child won’t be the one in 88. Anxiety builds to fear when a child isn’t talking by their second birthday.   Think of the mother in the Hunger Games waiting, with hope, despair, and defiance as Effie Trinket gleefully pulls her child’s name out of a glass globe.  Families hope that some other child’s name will be read, and feel relieved and guilty if their child is passed over, at least this time.

There is a lot of discussion about Autism statistics.   Many authorities have said that the rise in Autism is false, that the statistics just reflect a widening of diagnosis.  But, when factors are teased out carefully, as in the California Department of Developmental Services data,  it is clear that a broader diagnosis only accounts for part of the rise in Autism rate.

The dramatic rise in Autism rates is a mystery.    So why aren’t young parents panicking? Why aren’t they demanding answers?  This is a huge epidemic, and yet…….are we allowing ourselves to be snowed by these experts who deny that the epidemic is real?

The Autism crisis has a familiar feel.  I lived in New York City during the peak of the AIDS epidemic.  It was a scary time, and I jumped in as a volunteer caregiver for people dying of AIDS.  I wore my Silence = Death t-shirt to ACT UP rallies to demand speedy treatment trials. People were dying- – fast – – and there was no time to wait for lengthy clinical trials, no time to wait for the political process to creep forward. Do our children have more time to wait?

Act-up protesters staging a Die-in, New York City 1989

During the AIDS crisis, friends and lovers, as well as people with AIDS, took to the streets.  You never knew who would be the next to fall, so there was no point of safety.  Gay men got tested  for HIV every six months, never safe even with condoms. With Autism, expectant parents face their odds,   hoping that their child won’t be that one in 88.  Once children pass the developmental milestones, they are safe from the Autism epidemic, and parents can move on to worry about PTAs and soccer. The names are picked out of the glass globe once in a lifetime, so  parents can be confident that they have been favored, and their child has been spared.

When I hear prominent authorities claim that there is no real rise in Autism, I wonder if parents are being deliberately confused, to stop us from  demanding answers.  If there is no rise in Autism, we don’t have to look for a new cause.  If genetics are the primary cause, then no action needs to be taken, because there is no epidemic. If the dramatic rise is real, that means there is an environmental cause for Autism.    That means there is someone to blame, but also that there is hope for change.

In the Hunger Games, President Snow said that “a lot of hope is dangerous”. What did he mean?   If  people have hope, they may become unreasonable, and demand  change. In our case, they might demand effective treatment for their children.  If parents of young children with autism knew that intensive early treatment results in 50% of children being at or  near age level by kindergarten, would they  demand insurance companies pay for treatments such as Applied Behavior Analysis? Why do parents accept that insurance doesn’t cover scientifically validated treatment for autism, when it covers treatment for other childhood diseases?    Because it’s still a mental health disorder, rather than medical?

I don’t know what percentage of children get adequate intensive treatment. Mostly they get a little of this and a little of that.   My own daughter had 40 hours a week of Applied Behavior Analysis from the age of 4, and we were lucky to be living in the State of Pennsylvania, which paid for it all. She started late: these days,  children can be diagnosed between 1 and 2 years old, and start treatment earlier. Pennsylvania still pays for early Autism treatment when many states pay for much less. There isn’t enough money to go around, and Pennsylvania is gradually and deliberately whittling away at the treatment they pay for.   I hope it’s enough.People say my daughter was lucky as she was born before the flood of new Autism cases.    But lucky?  Her name was drawn out of the Autism globe, too.   But,  she started intervention in time, and she is part of the lucky 50%. My daughter is attending a small charter high school, in regular classes.

Robot child

When people say that Applied Behavior Analysis will turn children into robots,  I swallow my rage.   I’ve seen what happens when kids don’t have high quality intervention, so  becoming a robot seems a minor risk to me. Again, the robot myth seems designed to throw parents off course. Autistic kids without quality intervention don’t do well.  I’ve seen countless children punished, restrained, and trapped by inability to communicate and extreme problem behaviors.  Children with bodies scarred from self-injurious behaviors. Parents with bruises.  Brothers and sisters who have to hide in the basement during tantrums, and who never have friends over. Families who are lonely and isolated and exhausted, getting up everyday to start the battle one more time.  I feel relieved, and a little guilty that my daughter has done well, as there are so many families and children still fighting for their lives in the arena.

Who is the one fighting for survival?  Is is me, or is it my child?   Up until now it has been me, but now I am waiting for her to take over.

ABA did not turn my daughter into a robot: she is a live girl with a heart, and a brain, and courage, who dreams of traveling to France, and going to college as far away as we will allow.  I am waiting for her to start spinning, a girl on fire.

Learning to paddle solo

The Autism Games: may the odds be ever in your favor…….